Grieving

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ARCG

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Sunday will be two weeks since I lost my soulmate. I am still in shock, even though we were 6 years since diagnosis and hoapice hD warned me about a month ago the decline could be rapid. We just didn’t believe it, we had adapted so many times and stabilized for a while, we thought we could do it again.

i guess I should be grateful that he lived his life on his own terms, but seeing him decline so rapidly that last week, no matter what comfort measure we took, just shakes me.

I hope he is at peace now, I wish I could be certain. He was so full of life, even when he was sick.

Annie
 

lgelb

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Our husbands sound similar, Annie. The last week is a wild ride with little room for shock and grief, so maybe we shouldn't be surprised that it kicks in with a vengeance after.

The PALS no longer with us have indeed found their peace. They pass having long known that they would be unable to resume the lives they loved the most. We hope that someday they will not need to learn that, but today they do.

Since it's the day after Thanksgiving, I'm grateful to know other CALS like you, who have delivered fiercely and amazingly on their commitment to the best possible life and death for their PALS.

--Laurie
 

jonico

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Just want you to know I hear you Annie. Laurie said it well...Jon
 

ARCG

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Thank you, Laurie and Jon.
 

Jrzygrl

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Sending you big hugs. We're never ready, no matter what the circumstances. You were a wonderful caregiver and wife.

I believe in an afterlife. I hope you soon feel his arms wrapping you with his love.
 

DFM20

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Annie,
I am so sorry for your loss. It seems no matter how long we have to prepare after diagnosis, it is never enough. May he Rest In Peace. My thoughts are with you.
Dave
 

Narrowminded

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Thinking of you Annie, it is a hard road after they are gone, but they are at peace and no longer bound by the illness.

hugs,
 

Kim Ordile

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Thank you for loving and caring for him. I am praying that God will comfort your heart and fill the void in your life. I know that your love one is grateful for everything you did. May the memories that you have be sweet. Sending you a Big Hug! Jesus loves you Annie!
 

cbiedron

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I’m so sorry Annie. It has been three and a half weeks for me now. Taking it hour by hour sometimes. It’s okay to feel all kinds of feelings. You were an excellent caregiver and he is at peace. Hugs.
 

ARCG

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Thank you all for your kind words. I keep expecting to see him every morning when I wake up. Can’t believe he is gone.
 

ARCG

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Tomorrow will be two months since my husband passed.

Yesterday I donated most of his equipment to a local ALS foundation Loaner closer. Hopefully it will help other folks going forward.

But I find that the I am feeling overwhelmed with the enormity of all we faced over the past 6 years. How and why did this happen to someone so good, health conscious and kind? I know there are no answers. I also hate that my children had to face something so tragic in their young lives, when they should have been enjoying their carefree youth.

I want to grieve in peace, but all the forms, phone calls and bureaucratic stuff that needs to be addressed is crazy, even though we did the planning we were supposed to do.

It is also hard because we couldn’t gather for his service, just the nuclear family.
 

Samkl

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I’m so sad for you, Annie. I wish I had something to offer to help you. I do know that everyone who reads your post will be thinking of you with love and support, and I hope you can sense that. Xx
 

COSister

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Annie, I too am so sorry to read about your loss and grief. Brings back emotions and feelings for me, as my sister died in August of 2019. It is a long journey we are left with when someone we love and depend upon so much dies. I too believe in an afterlife and Kay talked about her next adventure. I like to think of her as restored, out of the chair. She also got every moment she could in her almost 6 years with ALS. Wishing you peace and strength - from another past CALS. - Marcia
 

lgelb

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I wish I had answers-- it does seem like ALS is a disease of nice, smart, active people.

Still, I wouldn't mourn your kids' childhood. They will have a perspective as young adults that a carefree childhood doesn't provide, and may well have better lives as a result. Granted, it's not a path to maturity that anyone would choose, but the same "make the most of it" spirit that he and you showed them is not a bad foundation for doing the same.

Our son grew up knowing that his dad had a fatal genetic disorder, with double-digit surgeries, etc. before we got to ALS. He does not take life for granted, but that has not dimmed his ability to build and appreciate what he had/has.

Best,
Laurie
 

affected

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Hugs Annie, none of it makes sense, not one bit.
 
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